Permission to Be Parents: Support Groups for Families Dealing with an Eating Disorder

Parents of a child with anorexia nervosa often feel embarrassed or isolated, like they’re on their own dealing with this difficult illness. For decades, the first line of treatment for an adolescent with anorexia was inpatient care to restore their weight, with little parental involvement. In the late 1970s and early 1980s, however, clinicians started to recognize the importance of involving families in their child’s recovery. Unless a teen returned from inpatient care to parents who understood the illness and how to manage it, they were likely to relapse.

Dr. Le Grange’s family-based treatment textbook for parents

Daniel Le Grange, PhD, Professor of Psychiatry and Director of the Eating Disorders Program at the University of Chicago, is one of the pioneers of this new approach, called family-based treatment. He said this method recognizes parents as part of the solution instead of blaming them for condoning or enabling their child’s behavior. “Our job is to be the consultants and help them find their footing again, given how confusing this illness is and how it has thrown them off track,” he said. “We see what we do as ‘Parenting 101,’ or giving them permission to be parents again.”

Family-based treatment has been traditionally focused on counseling families individually. The goal is to help parents understand their child’s behavior, and teach them how to encourage healthy eating habits and positive body images for their child. The program is effective, but in trials, 50 percent of patients don’t recover fully after completing the program. To close this gap, Le Grange and his colleagues are developing programs to expand the standard family treatment to include internet-based support groups that to connect parents of adolescents with eating disorders with each other.

Le Grange said he had long felt that some families needed more support than the hour or so of treatment they were getting through the standard therapy. He also noticed families connecting with each other informally in the waiting room before their appointments. So he and his colleagues started developing a series of studies to explore building formal support groups for parents.

The first of these used an online chat room where parents of children with eating disorders could discuss their challenges with each other. The results of this study were published recently in the European Eating Disorders Review. Parents at various stages of the family-based treatment program joined a secure, anonymous chat group once a week on Saturday for a two-hour session. Roslyn Binford Hopf, who was a postdoctoral researcher at the University of Chicago before moving to the University of Hiedelberg in Germany, moderated the sessions from Germany, highlighting one of its key advantages: It was convenient for both parents and clinicians, who participate from anywhere.

“I think this speaks to families with two or three kids, lots of other commitments and two busy, professional parents,” Le Grange said. “They have a need to hear from other parents and get the support, but that’s adding another appointment to their schedule. To be able to reach them when it’s convenient for them, on a Saturday at home, really makes it a lot easier for parents.”

Le Grange said there are pros and cons to an internet-based support group. Convenience for families is important, and the anonymity helps break the ice for parents who are reluctant to open up about their situation. But they also miss out on the more personal connections made possible by in-person support groups. While this can be addressed by adding video conferencing, it’s still not the same as meeting someone face-to-face.

In a second study currently in progress, Le Grange and his colleagues are testing in-person support groups for parents, moderated by a clinician who guides the discussion on specific topics. They are also studying ways to customize the standard family-based treatment for patients who don’t respond within the first few weeks. It’s all part of their larger program to reach that 50 percent of adolescents who don’t fully recover during the program. Helping parents find a connection with others may be the key to closing that gap.

“I think there’s something to be said for the comfort of hearing that you’re not on your own,” Le Grange said. “Intellectually, you understand you’re not, but when you’re in the thick of things having to go through this and your child is particularly difficult, you don’t feel that way. When you learn that’s not quite the case it gives you courage again and the support that I think is very helpful.”